Caring for a sick parent
July 1, 2011 12:20 PM   Subscribe

My mom had breast cancer several years ago, and developed lymphedema, which she was managing with pain medication until last November. In November, the pain management clinic decided to change her medications, which led to a gradual but dramatic decline in my mom's standard of living.

Earlier this month I realized that she's not eating much, and has lost approximately 30 pounds since February. Part of the reason it took me so long to notice her condition is that I recently had a house fire that left my boyfriend and I moving from short term place to short term place, and I wasn't able to focus on her as much as I should have until we settled in a bit.

She now doesn't leave the house at all, and has told me that her back and lymphedema hurts so much that she's not capable of cooking her own food, or doing anything more than moving from the bed to the couch. She also has developed obsessive fixations on her health in general (she was convinced she had periodontal disease, a problem with her ovaries, malnutrition, and dehydration. She went to the hospital for the malnutrition/dehydration, and they told her she was medically fine. She had the other issues checked out and is fine as well. She's also fixated on her refrigerator and air conditioner, and is convinced that they are broken, when I, her apartment maintenance people, and her home health nurse have all tried to assure her that they're fine.), and complains of chronic dry mouth (which could be legitimately caused by her medications, but to me, is not a reason to stop taking the medications when she is then unable to function).

When I realized the condition she was in, I began attending all her doctor appointments, which has been helpful. Her PCP put her on Cymbalta, as well as a sleeping pill, a week and a half ago, and also authorized a home health nurse and physical therapist to visit her twice a week. The pain management clinic has agreed to allow her to use the medication that was previously working for her as well. I have been doing her shopping and laundry, but am not able to go to her house and personally cook for her each day.

I was very hopeful that after seeing the doctors and beginning medication she would start to improve, but things seem to have gotten worse in the past few days. She calls me at all hours saying that her back hurts so much that she can't move, but then will tell me that she's been up adjusting the air conditioner to make sure the temperature is right. She has been very depressed and has legitimate pain, but I'm frustrated by the fact that she seems to be refusing to care for herself at all, even to the limited degree that she can. She complains about the microwave dinners and other easy-to-make foods I bring to her, and occasionally implies that she feels she needs live-in care, rather than the help we're able to offer. Her home health nurse mentioned today that she thinks my mom should also be visiting a psychiatrist because of the odd things she says, so I've called her doctor to ask for a referral.

I would very much appreciate any advice you have for caring for an ill, or possibly mentally ill parent. My mom is only 58, and I have been taking completely off guard by this situation, because she was doing so well until recently. I am an only child, and my dad does not live in the US. My mom has two sisters who live about an hour and a half away, and even though they are not in the best health, I'm planning to call them about this situation this weekend. I think the fact that home health is involved will take some of the pressure off me, because if nothing else, other people will be seeing my mom regularly, but I'm finding myself drained and angry with my mom when she calls yet again with what seems like an imaginary issue.
posted by odayoday to Health & Fitness (10 answers total) 5 users marked this as a favorite
Your mom's condition sounds a good deal like something we went through with my grandmother years ago. Eventually, she was hospitalized for an injury to her foot, taken off all of her medications, and emerged more lucid and in better mental and spiritual health than we'd seen her in years. Now, she eventually went back on some of her meds, but many were discontinued and some dosages were decreased and others were increased. It seemed like taking her off those meds and effectively starting over was incredibly helpful, though. It's possible some of her meds were contraindicative to one another. In any event, there must be a better way for your mom.

The first thing I thought when I read some of your mom's symptoms was that she needed a psych evaluation. She seems obsessive and paranoid. Being in chronic pain, somewhat isolated and scared, combined with meds that may be working opposite one another and affecting her in some strange ways can be incredibly debilitating. Pain and fear can do terrible things to people. You do not need to feel guilty, I hasten to add. This is the nature of illness for some people. It's also okay and normal for your mom to not want to take meds that make her feel worse. Dry mouth is also really bad for your teeth and gums. She should have a dental exam, too, to rule out infection.

What you also need is 1.) to get her pain management team to re-evaluate and perhaps change her meds. She's suffering. This is unacceptable. Because she is not able to advocate for herself, you need to advocate for her or engage a trusted friend or family member who is unafraid to speak frankly, persistently and persuasively to her doctors; and 2.) a larger support network. Is your mom a member of a church? Does she have alumni from where she went to school near? Is there a social worker or nurse you can speak with at either a hospital she's been cared for in the past or at a doctor's office where she's currently seen that could recommend a support group? Is there a community center where she might find some recreation and some companionship? Does she have hobbies? Could she find, say, a knitting group? A bridge or cards group? Someone to read to her, even?

I know it's hard. She's not herself so please don't take her constant calls personally. She needs help and you need help to care for her.
posted by TryTheTilapia at 1:26 PM on July 1, 2011 [1 favorite]

I take care of my mother, who has near constant pain, can't take much pain killers, can't stand or walk for long periods of time, and in general needs my care.

A few years ago her doctor put her on some new meds. They were pain killers and tranquilizers. My mother went nuts. She was saying things that didn't make sense, sleeping all the time, and I feared she had lost her mind.

Then her body adjusted to the medications and she was back to her normal self.

As for how to take care of an ill parent.. it requires a lot of patience and love. Just yesterday I was ticked off at my mother because she didn't want to cook dinner, had no suggestions for what she wanted to eat, and I had just spent all day working. I was tired and just wanted her to tell me WTF she wanted to eat so I could make it and get some rest. I slammed the microwave door, emptied the dish washer and threw the silverware in the drawer. She ended up eating a microwaved spaghetti without complaints.

None of the mini-temper tantrumy stuff helped. Eventually I had to take a deep breath, remind myself that this was my mother.. who changed my diapers, raised me, and now she needs me. I'll be damned if my mom starves because I can't be bothered enough to feed her. I would regret it for the rest of my days.

I know I'm not giving you a magical answer, because there isn't one. Your mother is ill, perhaps she'll get more stable and less dependent on you, but she might not and you need to be prepared for that.

Find a therapist. Not because you've got something wrong with you.. but because having someone to talk to when you're in a situation you can't get out of is a way to release steam.
posted by royalsong at 1:31 PM on July 1, 2011 [1 favorite]

Response by poster: Thank you, TryTheTilapia. She used to be very involved with a church, but when she was diagnosed with cancer she pulled away from them, saying that they asked too much from her, and that she was too sick to be involved (that was before she developed the pain that she's dealing with now). She and my uncle used to be very close, and would do a lot of things together, but about a year or so ago she started saying that she felt like he would use her for money in some situations, so she wanted to avoid him. She also used to spend time with her sisters, but now says that they are also sick, so she can't take care of them and they can't take care of her. I think a lot of it is the pain and depression, but she has pretty much isolated herself from everyone but me (and now the home health team), and spends most of the day just watching tv, which can obviously compound the depression as well.
posted by odayoday at 1:34 PM on July 1, 2011

Response by poster: Oh also, my uncle has since moved to another state, which even though she wouldn't admit it, I think was very sad for my mom.

Royalsong, thank you for sharing. I think part of it is that this is all new to me, and I don't know whether what she's saying is true or not, which can be heartwrenching.
posted by odayoday at 1:38 PM on July 1, 2011

Has she been checked for brain mets? It's horrible to contemplate but given the behavioral changes you're describing you might make sure she's seen by her oncologist as well as her pain management team. Her cancer may have spread causing psychological symptoms or it might be drug interactions and or depression. Frustrating and hard to support her. Has she signed HIPPA releases so her doctors can talk to you? If not, it's a good first start to be able to talk frankly to her doctors. Looking for a local support group or just leaning on friends can help you cope.

I know how stressful this stuff is - been through it and you have to take careful of yourself first so you can be functional to help her. Easier said than done!
posted by leslies at 1:42 PM on July 1, 2011

I completely understand and sympathize.

Whether you know it's true or not, your mother believes it's true. If you constantly voice your doubts to her, she's likely to feel like you're either not listening or don't believe her. Especially since she's exhibiting some paranoia behavior.
posted by royalsong at 1:45 PM on July 1, 2011

Just an anecdote....when my Dad (age 87) was admitted to the hospital last November with what we thought was pneumonia but was eventually diagnosed as a heart attack, he was in very "iffy" condition for several weeks. He recovered enough to be sent to the rehab floor and then home just before Christmas. However, he wouldn't eat. Apparently there were many factors involved (his meds plus his very low heart function) but he just never felt hungry and had to be told to eat (and even then would gripe "I'm not a baby!" even though he was subsisting on a diet of Ensure). He continually lost weight and eventually had to be re-admitted to the hospital. The less he ate, the more mentally disoriented he became....he wouldn't remember why he was in the hospital and would complain when we visited him that the room was too hot/too cold/the staff wouldn't raise the blinds at the proper time/his lower back ached and no one cared etc, etc.. I heard from family members of nearby patients that Dad would ask them "Do you have a car? Can you get me out of here?"

I'm wondering if part of your mom's sudden odd behavior and obsessive/compulsive concerns could be due in large part to her brain not getting enough nutrition (because she's not eating enough) in combination with the various meds she's being given. In any case, it's a very tough situation for you. I encourage you to thoroughly investigate whatever assistance your state offers for Elder Care (often there are local programs available for everything from adult daycare "sitters" to personal counselors who will walk you through all the decisions to be made/options available when caring for an ailing parent. Area on Aging is a good place to start). The best advice I can offer is that when your mom complains about this or that, try to keep in mind that it's not really her "regular" self doing the complaining. She's not the same mom that you knew as a kid - her brain function is being altered by a combination of disease, drugs and malnutrition. Be as patient and helpful as you can but don't hesitate to enlist outside help whenever possible. Best of luck to you.
posted by Oriole Adams at 2:50 PM on July 1, 2011

I'm sorry. I know it's frustrating. The important thing right now is to talk to her docs about her meds and get a psych evaluation. Oriole Adams brings up a great point; if she's malnourished, that should be addressed, too. And I'm wondering if her dry mouth isn't a bigger problem than you might think. I really think a cleaning is called for and an exam to see that she doesn't have some sort of underlying infection. I speak from experience.

You're right; having her brother move away was probably very depressing. Maybe you could call him and schedule a visit? Or maybe you could encourage him to call and check in on a schedule, say, once every day or a few times a week? And have you talked to her sisters? Maybe her perception of how bad off they are isn't accurate. Maybe she's depressed and embarrassed to be seen by her sisters. Well, socializing is medicine for people in your mom's situation. You may need to gently but firmly put your mother and the rest of your family back in touch with each other. If they see each other, maybe you could take your mom to have her hair done and get her a new outfit beforehand. If she's anything like my grandmother, she hates seeing people without looking put-together.

Lastly, please consider looking into an exercise program of some sort for your mom. Is there a YMCA nearby? Sitting around watching television all day is basically like taking a sleeping pill. It's depressing. You might consider upping your exercise intake, as well, and eating as well as possible. You need all your available energy for this and the rest of your life, too.

So sorry about all of this. royalsong's advice to get your own therapist is spot-on, as well. You've got to get creative and be a little more bold in your approach for her sake and yours. You can do this. You can find people to help you. You can find a way to manage, I promise. You have to take care of yourself, too, in the midst of everything. Best of luck.
posted by TryTheTilapia at 4:38 PM on July 1, 2011

I'm late to the commenting here, but if she has lymphedema, is she under the care of a physical therapist? Lymphedema can be controlled (not cured) through special lymph-drainage massage, exercises, and support garments.

The National Lymphedema Network is a good place for help, advice, and referrals to a lymphedema therapist in her area if necessary. Controlling her lymphedema should mean fewer pain meds for her - plus uncontrolled lymphedema can lead to infections and loss of use of the affected limb.
posted by Rosie M. Banks at 9:27 PM on July 4, 2011

Response by poster: Rosie M. Banks, thanks for the info! I was not aware of the National Lymphedema Network, and will check them out right now!
posted by odayoday at 12:07 PM on July 5, 2011

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